peagreen

Hi, I'm the one who posted about the discovery of the new retro virus found in CFS and autism. I find this discussion very interesting because I have always felt that my kids' immune system issues resemble the lab findings found in AIDS...like an aquired immune defecit. Also, my son has an IgG1 subclass deficiency which is commonly found in...you guessed it, CFS. When my son gets a fever, his issues disappear completely leaving him completely normal. This makes me feel that the fever is temporarily knocking down a chronic viral issue. After the fever passes, and with any other type of immune system activation, he develops drunken and temperamental behaviors. I am very interested to learn where we can get tested for this new virus (XMRV). Does anyone know if Dr. Goldberg is testing for it? Paula

We tried a product called Enhansa, which is a Curcumin product. Both my kids had behavioral issues immediately. Our DAN doctor told us that it stirs up yeast for some kids, and this was most certainly the case for us. I have friends who have had success with it though...seems to be good mostly kids who don't have yeast issues. I think you're on the right track with your thinking. Paula

I've heard that the sealants don't last, and after they have eroded away, they leave the tooth even more vulnerable to cavities because the dentist has prepared the surface by grinding away the enamel. I had never had any cavities until two years after I had sealants put in on the advice of my former dentist. After that, I got cavities in the places where my sealants failed, and my new dentist said she rarely put sealants in for that very reason. Plus, I wonder about how safe ingesting that stuff is as it erodes away in your mouth. I wouldn't do it. I think it's just another way for dentists to make money. Paula

I don't have the actual lab results from the last round of lab testing that was just done. The nurse just told me over the phone that there was low IgA and IgG. In previous testing, he had low subclass IgG1, which I think is the worst one.

I live near Seattle, but am willing to travel to get answers.

I think there is a certain profile of kids who seem to be gifted and also have immune issues and quirky behavior, like OCD. In the 6.5 years since my son's diagnosis, I just keep running into cases like these. Some have allergic immune issue, and others have autoimmune, or both. I think these kids are also the ones who are at risk for vaccine reactions that can result in developmental disorders. I know of two kids who were totally typical 4 year olds, except for super high IQ and slightly OCD behaviors. Both these kids regressed into severe autism following the MMR shot at 4 years old! My DS is also one of these gifted/immune compromised kids. I declined the MMR vax because I was already worried about his immune system at age 1. I'm so glad he didn't get it because I'm convinced he would have crashed. I read somewhere that because of the pathologies that are going on with these kids, certain parts of the brain are not functioning properly. The brain compensates by over-developing in other areas. For example, my son's frontal lobe (executive function) doesn't work well which is why he has symptoms of ADHD. Perhaps in compensation, his cognitive functions took over.

Hello, I've been lurking for a while, hoping to make some sense of all this...and I could use some help. I have two children (DD, almost 3YO and a DS, 7). My son was diagnosed on the autistic spectrum when he was very young (14 months), which was a controversial diagnosis at the time. We started DAN! biomedical interventions and dietary changes immediately, and he improved quickly, shedding his diagnosis by age 3. Though he no longer has a spectrum diagnosis, he still has symptoms that look like ADHD, which get dramatically worse for a period of several weeks following ANY insult to his immune system. We have known since he was 2 that he does not mount antibody responses to P. Strep, or Candida, and has both low IgG and IgA. Three immunologists have dismissed these lab findings as meaningless because he has not had re-current respiratory/ear infections. They all wanted to re-vax, then check titers to see if there was an immune response. I declined these requests, not feeling that safe for my son. All three immunologists would go no further with us unless we re-vaxed. My son rarely comes down with cold type viruses. He starts to get symptoms of a cold, but then the symptoms just vanish in a day or two...but the behavioral changes still arrive, and last for many weeks. When he gets a fever type virus, he always spikes fevers of 105+ for 3 days, but it can be reduced with Ibuprofen/tepid bath. I'm not sure whether his immune system is over or under active, or both. What is different about my son, is that he doesn't have the typical symptoms of PANDAS. He doesn't seem to have OCD or anxiety in the way I see it described here, though he does get very ridged in his thinking, demanding that things be a his way. He becomes fixated on his ideas, and melts down if things don't go his way. He also a drunken behavior that comes and goes that I have always associated with yeast. He has to be on a maintenance dose of antifungal medication or he is so loopy he can't function. But even with that, he still has episodes of very strange behavior in which he can't stop laughing and using potty language, and bouncing off the walls/floors, and hitting himself in the face and laughing about it. These sudden episodes can last 5 to 45 minutes, and then he's normal again. My daughter is more typical, but also develops loopy/temperamental behavior and sleep disturbances for several weeks following viral infection. She often needs anti-fungal and antibiotics (Flagyl) to return to normal. I have sent my son's blood to Dr. C, but haven't rec'd results yet. He wasn't in an exacerbation at the time, so I don't know if that will be conclusive. His doctor ran DNASE-B and a bunch of other tests, which were normal. I would love to know your thoughts. Is there anyone out there with a case like this? And if so, did what therapies helped? Also, I read that if you have low or no IgA, you are not a candidate for IVIG because of possible autoimmune response. Since my son has low IgA, could he still have IVIG. Is he a good candidate? Thanks for your help! Paula

I don't remember which city, but I think he's near LA. Dr. Goldberg is famous for treating autism with antiviral meds. He believes that autism is caused by Herpes 6 infection, so he uses long duration Valtrex. Many kids have improved or recovered from this therapy. I think he has labeled it NIDS (don't recall what that stands for, but you can probably google it.) I've never heard of him doing anything with PANDAS, but it's possible. Paula

Hello all, I was wondering if any of you have seen this article about the discovery of a new virus which they have isolated in the blood of a large percentage of individuals with Chronic Fatigue Syndrome and Autism. It's a type of Rotavirus, which they're now thinking may play a role in these and other disorders, by disrupting the immune system in the same manner as HIV. I'm concerned not only about the impact this virus may have on my kids, if they have it, but also on how this might impact the safety of IVIG. The blood supply is screened for any kind of virus that is known, but since this virus has only just recently been isolated, it would not be included in that screening process. It makes one wonder what other yet unknown virus could be in blood products. Since we may be considering IVIG, do you think we should be concerned about this? I'm interested to hear your thoughts. http://www.ageofautism.com/2009/10/david-k...-infection.html Paula

Hi Alex, Did your son have nitrous oxide as an anesthetic during the procdure? The reason I ask is that it can cause a vit B-12 defficiency that can result in behavioral regression. My son had a reaction like this after his colonoscopy. We gave him vitamin b-12 shots and he improved quickly. Paula